Volunteering for EURORDIS

Learn about our volunteers: Who are they? What is their role? How do they contribute? Read the EURORDIS Volunteer Charter.



EURORDIS volunteersEURORDIS is extremely grateful to the group of dedicated individuals who offer their time and expertise to improve the lives of people living with a rare disease and their families. 

Over the years, EURORDIS volunteers have played a crucial role in making EURORDIS an independent, strong voice, shaping healthcare policy that benefits people with rare diseases.

Most EURORDIS volunteers are rare disease patients or family members. Due to the lack of available information for many rare diseases, patients find themselves becoming experts of their own disease and of their national health care system.

EURORDIS volunteers are highly committed to the rare diseases cause, sharing, together with staff, the EURORDIS Board of Directors and other volunteers, the mission to improve the lives of people living with a rare disease and their families. 

EURORDIS volunteer patient advocates are mainly involved in advocacy activities and/or disseminating public information to raise awareness of the common challenges and injustices faced by people living with a rare disease as well as promoting EURORDIS’ proposals to address those challenges. These challenges include obtaining access to proper diagnosis, adequate healthcare services, medicines and therapies and adapted social services. 

The scarcity of patients for each rare disease along with scattered expertise and resources pose a real challenge to patient advocacy. EURORDIS and its volunteers, representing people with rare diseases, thus speak with one collective voice, advancing the cause of rare diseases at the European level. Each volunteer contributes their experience and knowledge on relevant issues for rare disease patients such as developing basic, clinical and social research, timely access to orphan medicines, provision of care, information, patient registries and many other issues.

EURORDIS volunteer patient advocates are involved in many different aspects of our work including the following:

  • Projects
  • Internal Task Forces and committees
  • Patients’ online communities
  • Representing EURORDIS in EU high-level committees and in scientific committees of the European Medicines Agency (EMA)
  • Representing EURORDIS in European NGOs, networks and working groups
  • Voicing our organisation’s positions in international conferences
  • Moderating Patients’ online communities


Irrespective of how much time each person is able to dedicate to EURORDIS’ activities, the volunteer patient advocates’ experience is invaluable to better understanding both the diversity of situations faced by people living with a rare disease and their families throughout Europe as well as the common challenges, needs, expectations and hopes.  

EURORDIS thanks each and every volunteer for the time and energy spent working collectively to improve the lives of people living with a rare disease as part of EURORDIS’ voice of rare disease patients in Europe.

The time that our volunteers spend working for EURORDIS is an asset and a resource for our International non-governmental organisation. Their time is therefore recorded and accounted in our financial statements.

Below are the main dedicated groups of people who volunteer for EURORDIS. As more and more volunteers continue to become involved, we look forward to recognising all of them publicly.


European Public Affairs Committee (EPAC)

The EURORDIS European Public Affairs Committee (EPAC) was created on 27 March 2004 to provide support to the advocacy activities of EURORDIS

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Therapeutic Action Group (TAG)

The Therapeutic Action Group (TAG)  is composed of EURORDIS volunteers in the scientific committees and working party at the European Medicines Agency (EMA)

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Policy Action Group (PAG)

The EURORDIS Policy Action Group (PAG) encompasses the 8 patients’ representatives who are nominated on the Commission Experts Group on Rare Diseases (former EUCERD – European Committee of Experts on Rare Diseases) as well as two observers from EURORDIS.

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DITA Task Force

The Drug Information, Transparency and Access (DITA) Task Force closely follows the work done by patients and consumers at the European Medicines Agency (EMA) and in the European Network of HTA agencies (EUnetHTA) in the areas of product information, transparency of the regulatory process and access to medicines

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Social Policy Action Group

The Social Policy Action Group (SPAG) closely follows EURORDIS’ activities to promote the integration of rare diseases into social services and social policy.

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RD-Connect Joint Patient Advisory Council (RD-PAC)

RD-Connect is a global infrastructure that links data from rare disease research projects in a central resource for researchers across the world

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RareConnect Moderators

RareConnect.org is a growing online network for rare disease communities, bringing together thousands of patients, families, and groups who might otherwise be isolated

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Newborn Screening Working Group (NBS-WG)

Newborn screening is the process of systematically testing newborns just after birth for certain treatable diseases. Ideally, this practice is part of a larger programme that includes confirmatory diagnosis, immediate care, treatment and follow-up. The EURORDIS Newborn Screening Working Group (NBS-WG) was set up to review current policy and practice in the field of NBS, in order to develop principles for harmonious uptake/adoption of the NBS programs across the Member States with a view to...

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Digital and Data Advisory Group (DAG)

Recognizing the importance and potential impact on rare disease patients of digital technologies, patient data usage as well as artificial intelligence, EURORDIS identified the necessity of bringing rare disease patients' voices into these fields in order to help shape better tailored, ethical and sustainable solutions.

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The EURORDIS Health Technology Assessment (HTA) Task Force is a group of 12 persons who live with a rare disease or are parents of child with a rare disease. They are EURORDIS’ members experienced and/or trained at different extent in HTA, with various educational background and stories.

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EURORDIS’ Volunteer engagement is guided and regulated by the Charter of the EURORDIS Volunteers which has been adopted by the EURORDIS General Assembly on 8 May 2014 in Berlin.



The EURORDIS volunteers are engaged in various activities to achieve the same objective, i.e. help EURORDIS fulfil its mission to build a strong pan-European community of rare disease patients and fight against the impact of rare diseases on peoples’ lives.

Volunteers contribute their time, experience and commitment to EURORDIS to carry out different tasks, using their knowledge and best skills. 

Volunteers can: 

  • Represent EURORDIS in international/ European and/or national committees 
  • Represent EURORDIS in international/European and/or national conferences
  • Participate in internal task forces, working groups, committees, advisory groups or panels of experts 
  • Be involved in project steering committees, in conferences’ programmes and/or organising committees 
  • Take an active part in activities such as moderating online rare disease patient communities 
  • Provide translations of documents and other activities 
EURORDIS recognises and appreciates the work and dedication of its volunteers. The diversity of their competences, rare diseases and countries of origin all play a very important role and constitute a strength of the organisation. 
EURORDIS volunteers are not paid or financially compensated for their contribution. They are reimbursed for expenses directly incurred in the scope of their activity in a fair and timely manner according to the internal rules & procedures (a copy of which is issued to all parties), and covered by EURORDIS’ insurance when travelling for their mission. 

EURORDIS volunteers are committed to:

  • Adhering to the core values as adopted by the members of EURORDIS:
    • Mutual respect
    • Solidarity and mutual support
    • Equity and social justice
  • Respecting the Terms of Reference of their particular mission; each EURORDIS activity involving volunteers has Terms of Reference adopted by EURORDIS governance and accepted by each volunteer
  • Fulfilling their mission based on the core competences upon which they have been nominated:
    • Voluntarism
    • Professionalism
    • Capacity to ensure regular communication with different relevant stakeholders and listen to opinions and requests
    • Capacity to report regularly on their activities
    • Belief in progress
  • Reporting to their contact staff person on policy issues and/or delicate matters that require an official position of EURORDIS in line with the organisation’s governance practices
  • Contributing to developing and raising awareness of EURORDIS and the rare disease patients community in accordance with EURORDIS policy and objectives

EURORDIS is committed to:

  • Ensuring that the vision, mission and core values of the organisation are respected
  • Providing the volunteers with the necessary tools and staff support to fulfil their mission
  • Providing the volunteers with the necessary training and guidance to empower them to carry out their tasks
  • Ensuring regular communication with the volunteers, and listening to their opinions and requests
  • Valuing, politically and economically, the contribution of volunteers in the fulfilment of their mission
EURORDIS volunteers work closely with the staff as well with each other, providing support and team spirit. This mutually supportive team spirit includes the Board of Directors. Their common aim is to break the isolation of rare disease patients and their families.
Volunteers raise awareness of rare disease patients’ needs amongst the general public and policy-makers and advocate for timely access to diagnosis, adequate care, treatment and adapted services.


Download the EURORDIS Volunteers Charter as a PDF 


La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases